Woodward, Okla. —
A rare disease hasn't slowed little Talon Waibel down. Especially not now that he's got some new wheels.
It's been a difficult year for Talon and his family.
Last April, the Waibel family's home was destroyed by a tornado. But then in May, the family received an even more devastating blow when his mother and father Becky and Chris Waibel took the boy to the doctor for a routine checkup.
Concerns from the pediatrician led to a visit with a specialist and at 9-months-old Talon was diagnosed with Mucopolysaccharidosis I (MPS-I), more commonly known as Hurler's Syndrome.
According to the MPS Society website, www.mpssociety.org, MPS-I is a genetic lysosomal storage disease caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells, according to MPS Society website. Without these enzymes the cells do not perform properly and may cause damage throughout the body. Based on the nature of the disease, signs and symptoms tend to develop as the child gets older and more cells become damaged.
Treatment for this disease includes enzyme replacement therapy and a bone marrow transplant, both of which Talon received last year. But in preparation for his bone marrow transplant, the infant had to undergo chemotherapy.
"He was throwing up for 70 days straight," from the chemo, Becky Waibel said.
However, on Wednesday, July 10, the now 23-month-old Talon was all smiles when he was presented with a new tricycle.
Talon's tricycle is a special therapeutic model known as an AmTryke, because it is sponsored by AMBUCS, which is a community service organization that focuses on projects that create mobility and independence for people with disabilities. In fact, Talon's AmTryke was donated to him by the members of the Woodward Mid-Day AMBUCS Chapter, which has given out around 60 of the therapeutic tricycles throughout it's 25 years of service in the community.
Talon wasn't the only one beaming over his new tricycle. His parents were pleased, as well, and took turns using a pull bar to help the boy ride around the room during a reception held at Woodward Regional Hospital's new Rehab Clinic on Wednesday to celebrate Talon's new wheels.
"I think it's wonderful," dad Chris Waibel said. "I think it will help him to be able to use his joints, loosen up his elbows and knees. And the more we practice by putting him on it everyday, he can build up to where he's doing it on his own."
His wife agreed, saying "it's great because it moves everything in his body, it gets his arms and legs moving, which helps with his stiff joints."
"We're just really grateful for the AmTryke and think it's really going to help him with his movement," Becky said.
However, she said he's already quite mobile.
Like any other child his age, she said "he's up running around, jumping on the bed, and climbing on everything."
"He was sick for such a long time," Becky said, but noted that "he is doing really good now."
"And he's constantly eating," she said, smiling with pride as she looked over at her son munching on a cookie during Wednesday's reception.
THERAPIST THE KEY FOR GETTING NEEDED AMTRYKE
Almost as pleased as the family was Talon's physical therapist Jason Moore.
Especially since "it has been a process" working with Talon to the point where he was able to ride the tricycle, he said.
"Talon didn't like the AmTryke at all the first time he saw it, but we've gotten to the point at his last couple of visits where he just goes for it first thing," Moore said.
And now Talon doesn't have to wait until a physical therapy session to enjoy the tricycle, because he has his own, customized AmTryke to take home and ride whenever he wants.
Moore played an important role in getting the AmTryke for Talon, because he was the one who recognized that the special tricycle could help to supplement the toddler's other ongoing physical therapy.
Moore said he had the opportunity to learn all about AmTrykes during the 2012 AMBUCS National Conference which was held in Oklahoma City a year ago. He was invited to attend by a coworker, who is also a member of AMBUCS.
During that conference, he said he helped to fit "about 15" AmTrykes for various different recipients and therefore got hands on knowledge about the different styles of AmTrykes and how they could help patients with a wide range of needs and abilities.
"Then when I met Talon, I knew the AmTryke would be perfect for him," Moore said.
In working with Talon during physical therapy, he said he learned the boy has "a bit of a lack of range of motion and strength in his upper extremities and his lower extremities."
However, he said the AmTryke will help Talon build on his range of motion and strength as he reaches, pushing and pulling, with his arms and legs to turn the gears and get the tricycle to move.
"It also will help him with his coordination of movement since the hands and feet are going at the same time. Right now Talon has some coordination problems with walking and running, but I think this should help him evolve to the next stage where he's jumping and running better," Moore said.
After realizing that Talon could use an AmTryke, Moore then met with members of AMBUCS to arrange the purchase of the tricycle and took Talon's measurements to ensure that they got an AmTryke that was the right size and had the right accessories. Eventually they selected one of the smallest models, which only has a 9-inch front wheel, with attachments including both a pull bar and a push bar so that Talon's parents can help him get used to moving around in it.
Moore also told the Waibels that the model that he selected has an extendable frame so that as Talon's arms and legs grow longer he can still continue to use the AmTryke until he's ready to move up to the next size. AmTrykes come in a variety of models, which include 12-inch, 14-inch, and even 16-inch wheels.
"There's just so many benefits to these AmTrykes, I just wish everybody who has a child who needed this would have the opportunity to get one," Moore said.
But he said the problem is that "I think people don't know about them as well as they should."
"I mean I've been a physical therapist for 7 years and I'd never seen them before last year," he said.
However, now that he knows about them, Moore plans on helping to spread the word about them and help get AmTrykes for those patients he sees like Talon who can benefit from them.
"I think the best thing is to educate the therapists and doctors because they're the ones who are seeing these kids who they can help," he said.
For more information about AmTrykes visit http://www.ambucs.com/amtryke/.